Article: Looking Forward: Dr. Peterson on ME/CFS Research, Treatment Options and Hope for the Future

Article: Looking Forward: Dr. Peterson's ME/CFS - Hope For the Future

You can view the page at http://forums.phoenixrising.me/content.php?490-Dr.-Peterson-Talks-On-Diagnosing-Treating-XMRV-CFS-MECFS-chronic-fatigue-syndrome

 

acer...re: monkeys....that sounds EXACTLY like what happend to me..everything was centered around the back of the neck and brain...all the pain, discomfort, and inflammation. yet when monkeys were infected with XMRV, they hardly found any virus in the brain. i dont understand that.

i still think its a retrovoris but since herpes drugs help so much, does the retrovirus immediately wake the herpes viruses up??? wouldnt it take time for the immune system to weaken enough to wake them up??

 

i too would love to hear from anyone dr. peterson has treated with cidofovir with no cmv...because that is what i am doing. i know one lady who has just ebv and hhv6 and was offered cidofovir..but chose to stay with valcyte.

 

acer...re: monkeys....that sounds EXACTLY like what happend to me..everything was centered around the back of the neck and brain...all the pain, discomfort, and inflammation. yet when monkeys were infected with XMRV, they hardly found any virus in the brain. i dont understand that.

i still think its a retrovoris but since herpes drugs help so much, does the retrovirus immediately wake the herpes viruses up??? wouldnt it take time for the immune system to weaken enough to wake them up??

I guess what I have to say is this:

- Pathogens themselves don't always cause the damage directly, they can cause inflammation, give off toxins, or influence the host in such a way that they are susceptible to other damaging pathogens that actually cause the symptoms (think HIV causing low CD4, which then allows opportunistic infections which then cause symptoms).
- Its possible that whatever is the underlying agent that causes ME/CFS suppresses NK cell function in order to evade defeat by the immune system. Herpes viruses might get re-activated due to this as a byproduct of the NK cell function being low.

But, these are just my speculations. These are all good questions that need to be answered by research.

 

Hi Cort, All:
Quick question, when we are talking about NK cells, which in particular do Klimas/ Peterson look at?
CD8 ? CD 16+CD56?
And how low is low? (Is it clearly below reference range that is found significant/useful, or does low-normal still give them good info?)

I'm seeing Klimas in the next few months I hope...Just curious about how NK cells are read... Thanks!

 

Really interesting Marco! A Nijs recently concluded the central sensitization is present in CFS. I think the studies showing increased pain sensitivity after exercise - now pretty well established I think, are fascinating. I think this fits in with sensory gating? The Lights believe infections in the dorsal root ganglia may effect sensory processing and Clauw believes sensory processing problems are key in FM - and really with all the problems with outside stimuli, chemical sensitivity and the many symptoms present in these disorders, I think it fits really well.

Thanks Cort.

I can't seem to track down the full paper you referenced but have browsed some of the earlier ones.

Sensory gating and/or reduced sensory thresholds could certainly explain many of the 'odd' symptoms we experience such as PEM; brain fog; 'overload phenomena'; multitasking problems; temperature intolerance etc plus your chemical sensitivities and my food sensitivities.

 

"The hyper-aggressive patients impugning researchers' integrity are, from his stance, only hurting the community and their own chances for help".

That's putting it politely. I think it's been obvious for some time just how much damage this small "hyper-aggressive" group has caused. Disheartening to see how many people have jumped on the conspiracy bandwagon railing against some of our best and most dedicated doctors and researchers. Baffling and absurd that anyone would believe someone like Dr Peterson would participate in attempting to squelch research for his own personal gain. Nothing could be further from the truth.

I choose to focus on the reality of how much these dedicated folks have given and continue to give to this community. Those who perpetrate lies and hostility will fade away. Truth/integrity will win out. I choose to stick with the winners.

It seems clear, from the history of CFS/ME, that patients do need to hold scientists, researchers, governments and the medical profession to account and to hold their work up to high levels of scrutiny.
And so I personally think that a balance needs to be struck between aggressive activism/advocacy, and complete passivity.
Maybe 'assertive' advocacy would be ideal. But one person's 'assertive' is another persons 'passivity' and another person's 'aggression'.
So who knows exactly where the right balance is... For the PACE Trial, we've been assertively trying to get the Lancet to admit to its mistakes for ages, but with no success whatsoever.

It seems clear that if the ME community passively accepted what other people and institutions do in the name of CFS/ME, then this would be very damaging for our community.
So I think there is a balance to be struck... And maybe some patients don't always strike the right balance... But this a very subjective issue, and there is a wide spectrum of opinion about where the balance should be struck.

And the scientific community also has its fair share of people who do not play nicely, and who have proactively harmed the ME community over the years.

I think one needs to be very careful not to direct criticism at patients, but only at specific actions, or there is a danger of being, or being seen as, divisive.

Although critiscisms sometimes need to be made, I do feel uncomfortable with blaming patients for the problems within our community, just as I feel uncomfortable with patients attacking honest researchers.

I think that to blame a group of patients is not a very constructive approach to community harmony or patient/researcher harmony.
And to what end? This sort of criticism isn't going to change anyone's behaviour, unless it's targeted directly at a specific action with reasons given as to why it could be harmful. But clearly the people who are being criticised might not agree with these criticisms anyway.

Personally, I also just find it uncomfortable to blame patients for harming our community. Period.
We have a very large community, and when people have been abused, accused, neglected, ignored and treated so unfairly for so many years, then it seems fairly obvious that there is going to be mistrust and an angry backlash at times.
So I find blaming an ME patient for being angry a bit odd... I find it hard to understand why blame isn't placed at the door of some scientists and institutions who have gone out of their way to actively harm the ME community, and to push back ME research, over the years... All of which has led to some patients being angry.

Anyway, I just wanted to look at the big picture here, and to add some balance to the comments made.

 

Hi Bob,

And so I personally think that a balance needs to be struck between aggressive activism/advocacy, and complete passivity.

No one would argue with you on that.



But one person's 'assertive' is another persons 'passivity' and another person's 'aggression'.

Agree in general, but thats not the case here. The aggressiveness I'm referring to would be considered aggressive, and even viscous by most objective observers. I doubt very few people other than those involved in the behavior would view it as acceptable assertiveness or justifiable anger. Dr Peterson says it's damaging, and that's enough clarification for me.



It seems clear that if the ME community passively accepted what other people and institutions do in the name of CFS/ME, then this would be very damaging for our community.


This is obvious to all of us. I've been around here over 20 years now and fully understand our political challenges. I've done my share of advocacy fighting for recognition. Of course we have to keep up the fight, but that's real different that slandering our best doctors and researchers on a world wide stage, without a shred of credible evidence for the accusations.




I think one needs to be very careful not to direct criticism at patients, but only at specific actions, or there is a danger of being, or being seen as, divisive. Although critiscisms sometimes need to be made, I do feel uncomfortable with blaming patients for the problems within our community, just as I feel uncomfortable with patients attacking honest researchers.


I think your plural use of the words "The problems" is much too inclusive. Should be singular "problem". But, I do agree with you about being careful with criticizing patients, or anyone actually. Most often I just ignore negativity because responding only feeds the problem. I've overlooked many very offensive posts for this reason. My post does list a specific action, but it doesn't name specific individuals or groups. I agree with you that doing so would indeed add to the divisiveness.




I think that to blame a group of patients is not a very constructive approach to community harmony or patient/researcher harmony.

My post was more about agreeing with Dr Peterson that the behavior is damaging to our community. The behavior has not only caused concern amongst our top docs like Peterson, but its also caused a very detrimental division within our community. Minimizing such damaging behavior would make us a stronger community. So, I feel that my post does ultimately contribute to harmony. Continuing on with it, would not.



Personally, I also just find it uncomfortable to blame patients for harming our community.

I do too! It makes me very uncomfortable. But obviously it's been happening. We have one of our top doctors warning that this behavior is damaging to our community. And who should we blame, if not those responsible for said behavior? But I do hear ya about focusing on the behavior, and not the person. I feel that's very good advise.




So I find blaming an ME patient for being angry a bit odd... I find it hard to understand why blame isn't placed at the door of some scientists and institutions who have gone out of their way to actively harm the ME community, and to push back ME research, over the years... All of which has led to some patients being angry.

Most of us are angry and frustrated with Gov health agencies, otherwise, I'm not sure which "institutions" your talking about. Of course it's appropriate to be angry at those who do indeed have blood on their hands. It right to confront these injustices assertively and even aggressively in some situations. But I wasn't talking about those situations. I was taking about the willful trashing of our good doctors and researchers without any credible evidence.



I no longer frequent the blogs and sites where this behavior takes place, and I avoid it when it appears here. I do this because I prefer to be happy. My post was just a nod of agreement with Dr Peterson. I would also prefer to shift focus back to being excited about all the new developments.

That to which we focus our attention grows stronger.

 

Hi Bob,

And so I personally think that a balance needs to be struck between aggressive activism/advocacy, and complete passivity.

No one would argue with you on that.



But one person's 'assertive' is another persons 'passivity' and another person's 'aggression'.

Agree in general, but thats not the case here. The aggressiveness I'm referring to would be considered aggressive, and even viscous by most objective observers. I doubt very few people other than those involved in the behavior would view it as acceptable assertiveness or justifiable anger. Dr Peterson says it's damaging, and that's enough clarification for me.



It seems clear that if the ME community passively accepted what other people and institutions do in the name of CFS/ME, then this would be very damaging for our community.


This is obvious to all of us. I've been around here over 20 years now and fully understand our political challenges. I've done my share of advocacy fighting for recognition. Of course we have to keep up the fight, but that's real different that slandering our best doctors and researchers on a world wide stage, without a shred of credible evidence for the accusations.




I think one needs to be very careful not to direct criticism at patients, but only at specific actions, or there is a danger of being, or being seen as, divisive. Although critiscisms sometimes need to be made, I do feel uncomfortable with blaming patients for the problems within our community, just as I feel uncomfortable with patients attacking honest researchers.


I think your plural use of the words "The problems" is much too inclusive. Should be singular "problem". But, I do agree with you about being careful with criticizing patients, or anyone actually. Most often I just ignore negativity because responding only feeds the problem. I've overlooked many very offensive posts for this reason. My post does list a specific action, but it doesn't name specific individuals or groups. I agree with you that doing so would indeed add to the divisiveness.




I think that to blame a group of patients is not a very constructive approach to community harmony or patient/researcher harmony.

My post was more about agreeing with Dr Peterson that the behavior is damaging to our community. The behavior has not only caused concern amongst our top docs like Peterson, but its also caused a very detrimental division within our community. Minimizing such damaging behavior would make us a stronger community. So, I feel that my post does ultimately contribute to harmony. Continuing on with it, would not.



Personally, I also just find it uncomfortable to blame patients for harming our community.

I do too! But obviously it's been happening. We have one of our top doctors warning that this behavior is self destructive to our community. And who should we blame for this specific problem, if not the small group of patients trashing these doctors and researchers in the public domain?




So I find blaming an ME patient for being angry a bit odd... I find it hard to understand why blame isn't placed at the door of some scientists and institutions who have gone out of their way to actively harm the ME community, and to push back ME research, over the years... All of which has led to some patients being angry.

Most of us are angry and frustrated with Gov health agencies, otherwise, I'm not sure which "institutions" your talking about. Of course it's appropriate to be angry at those who do indeed have blood on their hands. It right to confront these injustices assertively and even aggressively in some situations. But I wasn't talking about those situations. I was taking about the willful trashing of our good doctors and researchers without any credible evidence.



I no longer frequent the blogs and sites where this behavior takes place, and I avoid it when it appears here. I do this because I prefer to be happy. My post was just a nod of agreement with Dr Peterson. I would also prefer to shift focus back to being excited about all the new developments.

That to which we focus our attention grows stronger.

Hi Tristen,

Thank you for responding to my post in so much detail... and thanks for clarifying and explaining some of your earlier comments.

I still think that some of these issues can be subjective, and I think that we should be very careful with our wording when critiscing patients.

But after reading your latest post, I think it's safe for me to say that we totally see eye to eye on most of the issues we've discussed here.

Thank you again,

Bob.

 

Hi Tristen,

Thank you for responding to my post in so much detail... and thanks for clarifying and explaining some of your earlier comments.

I still think that some of these issues can be subjective, and I think that we should be very careful with our wording when critiscing patients.

But after reading you latest post, I think it's safe for me to say that we totally see eye to eye on most of the issues we've discussed here.

Thank you again,

Bob.

Agreed. And that's why I usually tread very lightly around this topic. Thanks for the reminder to do so.

 

i too would love to hear from anyone dr. peterson has treated with cidofovir with no cmv...because that is what i am doing. i know one lady who has just ebv and hhv6 and was offered cidofovir..but chose to stay with valcyte.

The nice thing about the new form of CFIDOVIR is that it has such a broad range; it appears to be effective not only against CMV but other herpesviruses as well as other unrelated viruses. I think this may be because the delivery system is so good.

My laymen's guess is that the original form of CFIDOVIR is probably good against other herpesviruses but there has been such worry about the side effects that unless CMV is concerned - physicians have not used it....just a guess mind you

 

Hi Cort, All:
Quick question, when we are talking about NK cells, which in particular do Klimas/ Peterson look at?
CD8 ? CD 16+CD56?
And how low is low? (Is it clearly below reference range that is found significant/useful, or does low-normal still give them good info?)

I'm seeing Klimas in the next few months I hope...Just curious about how NK cells are read... Thanks!

As I remember there are studies that look at particular subsets of NK cells and then there are studies that look at how well NK cells are functioning; ie how effective they are at detecting and killing other cells. I think the evidence for problems for the second is a lot, lot stronger in CFS. I don't know how many labs do NK cell functioning tests; if memory serves (correctly) - those are fairly difficult tests to run.

 

Hi Bob,

And so I personally think that a balance needs to be struck between aggressive activism/advocacy, and complete passivity.

No one would argue with you on that.

But one person's 'assertive' is another persons 'passivity' and another person's 'aggression'.

Agree in general, but thats not the case here. The aggressiveness I'm referring to would be considered aggressive, and even viscous by most objective observers. I doubt very few people other than those involved in the behavior would view it as acceptable assertiveness or justifiable anger. Dr Peterson says it's damaging, and that's enough clarification for me.

It seems clear that if the ME community passively accepted what other people and institutions do in the name of CFS/ME, then this would be very damaging for our community.


This is obvious to all of us. I've been around here over 20 years now and fully understand our political challenges. I've done my share of advocacy fighting for recognition. Of course we have to keep up the fight, but that's real different that slandering our best doctors and researchers on a world wide stage, without a shred of credible evidence for the accusations.

I think one needs to be very careful not to direct criticism at patients, but only at specific actions, or there is a danger of being, or being seen as, divisive. Although critiscisms sometimes need to be made, I do feel uncomfortable with blaming patients for the problems within our community, just as I feel uncomfortable with patients attacking honest researchers.


I think your plural use of the words "The problems" is much too inclusive. Should be singular "problem". But, I do agree with you about being careful with criticizing patients, or anyone actually. Most often I just ignore negativity because responding only feeds the problem. I've overlooked many very offensive posts for this reason. My post does list a specific action, but it doesn't name specific individuals or groups. I agree with you that doing so would indeed add to the divisiveness.

I think that to blame a group of patients is not a very constructive approach to community harmony or patient/researcher harmony.

My post was more about agreeing with Dr Peterson that the behavior is damaging to our community. The behavior has not only caused concern amongst our top docs like Peterson, but its also caused a very detrimental division within our community. Minimizing such damaging behavior would make us a stronger community. So, I feel that my post does ultimately contribute to harmony. Continuing on with it, would not.

Personally, I also just find it uncomfortable to blame patients for harming our community.

I do too! It makes me very uncomfortable. But obviously it's been happening. We have one of our top doctors warning that this behavior is damaging to our community. And who should we blame, if not those responsible for said behavior? But I do hear ya about focusing on the behavior, and not the person. I feel that's very good advise.


So I find blaming an ME patient for being angry a bit odd... I find it hard to understand why blame isn't placed at the door of some scientists and institutions who have gone out of their way to actively harm the ME community, and to push back ME research, over the years... All of which has led to some patients being angry.

Most of us are angry and frustrated with Gov health agencies, otherwise, I'm not sure which "institutions" your talking about. Of course it's appropriate to be angry at those who do indeed have blood on their hands. It right to confront these injustices assertively and even aggressively in some situations. But I wasn't talking about those situations. I was taking about the willful trashing of our good doctors and researchers without any credible evidence.

I no longer frequent the blogs and sites where this behavior takes place, and I avoid it when it appears here. I do this because I prefer to be happy. My post was just a nod of agreement with Dr Peterson. I would also prefer to shift focus back to being excited about all the new developments.

That to which we focus our attention grows stronger.

I agree with Tristen. Without knowing how big of a problem this is it is a serious issue. Do you not address because people who have an illness are immune from criticism? I don't think so; if its impairing yours and my ability to get and maintain health then it needs to be addressed.

That said I think creating more effective advocacy and showing why it is more effective is the key. After all, nobody, deep down, wants to impeding their own chance at a cure and most people, if there is a more effective way to do things, will probably do them. That obviously hasn't really been created in our community in a major way.

 

I agree with Tristen. Without knowing how big of a problem this is it is a serious issue. Do you not address because people who have an illness are immune from criticism? I don't think so; if its impairing yours and my ability to get and maintain health then it needs to be addressed.

I agree that patients' actions or behaviour shouldn't be immune from criticism, but I believe we should be very careful and sensitive about how we go about such criticism because it can be easily misinterpreted, or interpreted very negatively, and possibly interpreted in ways that wasn't intended.
And I strongly believe that we should not place any 'blame' on patients. We have enough blame directed at us already in this community. There are good reasons for the anger, bitterness and mistrust that I'm sure some patients feel. And it is these emotions that probably sometimes get expressed in ways that other patients don't like.
And I think we should ask ourselves if our criticisms of patients are going to be productive.

Maybe I'm asking people to tread on eggshells too much, but I do think that this sort of criticism has the potential to be divisive, just as when patients criticise researchers.
Also, it's very much a subjective thing. You say that patients are impairing my route to better health, but I'm not convinced by that. You might be right, but I'm not convinced. I do avoid that sort of controversy though, so I might not be aware of the sorts of behaviour that you are refering to.

That said I think creating more effective advocacy and showing why it is more effective is the key. After all, nobody, deep down, wants to impeding their own chance at a cure and most people, if there is a more effective way to do things, will probably do them. That obviously hasn't really been created in our community in a major way.

Yes I totally agree with you Cort - I really do think that having a really effective advocacy organisation could be the key to making a big difference.
I suppose the situation in the US is the same as in the UK - We could really do with a well funded, well organised and effective professional advocacy group.

 

And so I personally think that a balance needs to be struck between aggressive activism/advocacy, and complete passivity.

Anybody here have some free time so they can clone Bob for advocacy?

 

I agree with Tristen. Without knowing how big of a problem this is it is a serious issue. Do you not address because people who have an illness are immune from criticism? I don't think so; if its impairing yours and my ability to get and maintain health then it needs to be addressed.

That said I think creating more effective advocacy and showing why it is more effective is the key. After all, nobody, deep down, wants to impeding their own chance at a cure and most people, if there is a more effective way to do things, will probably do them. That obviously hasn't really been created in our community in a major way.

If you ever need a topic to write about, advocacy could be a good article topic. Being so close to the community and scientists, maybe you could come up with some suggestions for the best possible way this community to advocate for research dollars. Both for bio-medical research, but alos for diagonostics, and even workable nutrional therapies to use in place of CBT and PACE.

Could be a big win for health insurers, because it could cut way back on prescription medications, and health insurance costs.

Something to think about! Sorry to interrupt!

 

Anybody here have some free time so they can clone Bob for advocacy?

Haha!
That's a very scary thought!
You should probably try living with me for a week before you decide to clone me!

But, I suppose if I'm honest, I do quite like the idea of taking over the universe with Bob clones!
It would be a complete disaster tho! Nothing would ever get done, especially if each cloned Bob had a to-do list as long as mine!

 

That said I think creating more effective advocacy and showing why it is more effective is the key. After all, nobody, deep down, wants to impeding their own chance at a cure and most people, if there is a more effective way to do things, will probably do them. That obviously hasn't really been created in our community in a major way.

If you ever need a topic to write about, advocacy could be a good article topic. Being so close to the community and scientists, maybe you could come up with some suggestions for the best possible way this community to advocate for research dollars. Both for bio-medical research, but alos for diagonostics, and even workable nutrional therapies to use in place of CBT and PACE.

Could be a big win for health insurers, because it could cut way back on prescription medications, and health insurance costs.

This is something for which I think we all need to search for a solution...
It's something I've been thinking about myself for a while, because I do think it would make such a difference...


An effective organisation could raise and improve the profile of ME, raise funds for research, make ME a higher priority within governments, and also bombard the media with helpful and constructive stories about people with ME and interesting ME research.

 

I agree with Tristen. Without knowing how big of a problem this is it is a serious issue. Do you not address because people who have an illness are immune from criticism? I don't think so; if its impairing yours and my ability to get and maintain health then it needs to be addressed.

That said I think creating more effective advocacy and showing why it is more effective is the key. After all, nobody, deep down, wants to impeding their own chance at a cure and most people, if there is a more effective way to do things, will probably do them. That obviously hasn't really been created in our community in a major way.

I agree. I feel that focusing on the solution over the problem is the answer, and that's begun happening more naturally as a result of recent developments. That's what I meant by truth and integrity winning out. Truth will reveal itself eventually. Sometimes it takes willful action and sometimes it only takes ignoring the problem.

I think a problem at least needs to be acknowledged. Completely denying a problem of that magnitude is not at all productive or wise. Since it's obviously counter productive to engage in debate with those perpetrating the slander, I have chosen to ignore them and instead put my energy into supporting what I know as truth about these dedicated doctors.

On another note, I'm really looking forward to the CMX trial. http://clinicaltrials.gov/ct2/show/NCT01143181

 

It seems clear, from the history of CFS/ME, that patients do need to hold scientists, researchers, governments and the medical profession to account and to hold their work up to high levels of scrutiny.
And so I personally think that a balance needs to be struck between aggressive activism/advocacy, and complete passivity.
Maybe 'assertive' advocacy would be ideal. But one person's 'assertive' is another persons 'passivity' and another person's 'aggression'.
So who knows exactly where the right balance is... For the PACE Trial, we've been assertively trying to get the Lancet to admit to its mistakes for ages, but with no success whatsoever.

It seems clear that if the ME community passively accepted what other people and institutions do in the name of CFS/ME, then this would be very damaging for our community.
So I think there is a balance to be struck... And maybe some patients don't always strike the right balance... But this a very subjective issue, and there is a wide spectrum of opinion about where the balance should be struck.

And the scientific community also has its fair share of people who do not play nicely, and who have proactively harmed the ME community over the years.

I think one needs to be very careful not to direct criticism at patients, but only at specific actions, or there is a danger of being, or being seen as, divisive.

Although critiscisms sometimes need to be made, I do feel uncomfortable with blaming patients for the problems within our community, just as I feel uncomfortable with patients attacking honest researchers.

I think that to blame a group of patients is not a very constructive approach to community harmony or patient/researcher harmony.
And to what end? This sort of criticism isn't going to change anyone's behaviour, unless it's targeted directly at a specific action with reasons given as to why it could be harmful. But clearly the people who are being criticised might not agree with these criticisms anyway.

Personally, I also just find it uncomfortable to blame patients for harming our community. Period.
We have a very large community, and when people have been abused, accused, neglected, ignored and treated so unfairly for so many years, then it seems fairly obvious that there is going to be mistrust and an angry backlash at times.
So I find blaming an ME patient for being angry a bit odd... I find it hard to understand why blame isn't placed at the door of some scientists and institutions who have gone out of their way to actively harm the ME community, and to push back ME research, over the years... All of which has led to some patients being angry.

Anyway, I just wanted to look at the big picture here, and to add some balance to the comments made.

I don't think its that subjective at all. If you look at it in a more detailed manner I think you can pretty easily pick out behaviors that are counterproductive for any disorder; things like impugning researchers integrity, enveloping them in some grand conspiracy, threatening them, using profanity, using innuendo, not being polite in conversation - those are counterproductive for any disorder and basically, since we as a society tend to focus on the negative stuff those things tend to stand out. Its no mystery...

Its not about being 'angry' either; its about doing the things mentioned above - its about behavior that harms each of our chances for finding the cause of ME/CFS.. Check out some the comments on Racaniello's blogs....I don't think that's how you want to be represented...

Tough detailed questions that are focused on figuring out what's going on, uncovering possible problems with research papers, things like - I think the scientific community actually enjoys and embraces those types of interactions - but while coming with a predetermined idea that something is the answer and then automatically rejecting anything at odds with that may be understandable - its really at odds with how science works and we are dealing with researchers. Its not easy, for sure.......when you have an emotional commitment to something - to see it not work out; that places people with illnesses in a really tough position. I imagine that other disease groups have these problems as well - when findings with great promise start to fall apart.

But there's a big difference between dealing with the frustration of that and trashing researchers that just happened to come up with those findings. When the Peterson/Levy paper came out - it was time for Peterson to get hit (of all people). I think as a community we lost our moorings a bit. Like I said to some degree its understandable since XMRV had such promise and its still counterproductive behavior, in my opinion, that we should not just gloss over because the ME/CFS community has not been dealt fairly with in the past.

At some point you have to say that this is not working - that's it actually hurting us (making us look bad) and reinforcing bad stereotypes around CFS - all the while acknowledging that there is a history there that really kind of calls for that kind of behavior. I actually see it as a way to highlight past and present injustices....ie; of course people are really upset - a million people with ME/CFS in the US have basically ignored by the medical establish year after year and now you're going to take away the one finding that could explain it all; if people seem overly upset there's a reason for it...

 

I don't think its that subjective at all. If you look at it in a more detailed manner I think you can pretty easily pick out behaviors that are counterproductive for any disorder; things like impugning researchers integrity, enveloping them in some grand conspiracy, threatening them, using profanity, using innuendo, not being polite in conversation - those are counterproductive for any disorder and basically, since we as a society tend to focus on the negative stuff those things tend to stand out. Its no mystery...

Its not about being 'angry' either; its about doing the things mentioned above - its about behavior that harms each of our chances for finding the cause of ME/CFS.. Check out some the comments on Racaniello's blogs....I don't think that's how you want to be represented...

Tough detailed questions that are focused on figuring out what's going on, uncovering possible problems with research papers, things like - I think the scientific community actually enjoys and embraces those types of interactions - but while coming with a predetermined idea that something is the answer and then automatically rejecting anything at odds with that may be understandable - its really at odds with how science works and we are dealing with researchers. Its not easy, for sure.......when you have an emotional commitment to something - to see it not work out; that places people with illnesses in a really tough position. I imagine that other disease groups have these problems as well - when findings with great promise start to fall apart.

But there's a big difference between dealing with the frustration of that and trashing researchers that just happened to come up with those findings. When the Peterson/Levy paper came out - it was time for Peterson to get hit (of all people). I think as a community we lost our moorings a bit. Like I said to some degree its understandable since XMRV had such promise and its still counterproductive behavior, in my opinion, that we should not just gloss over because the ME/CFS community has not been dealt fairly with in the past.

At some point you have to say that this is not working - that's it actually hurting us (making us look bad) and reinforcing bad stereotypes around CFS - all the while acknowledging that there is a history there that really kind of calls for that kind of behavior. I actually see it as a way to highlight past and present injustices....ie; of course people are really upset - a million people with ME/CFS in the US have basically ignored by the medical establish year after year and now you're going to take away the one finding that could explain it all; if people seem overly upset there's a reason for it...

Thinking about it all further, I suppose I might be being a bit hypocritical here...
I stay away from all the negativity myself, because it bothers me, tremendously...
I really hate any personal attacks, and any spiteful and unreasonable negativity...
And I tend to challenge it whenever I see that sort of behaviour on the forums.

And because I avoid it, and don't generally see so much of the behaviour that is being discussed here, then I might not have the full picture, so I may well be down-playing the problem.

If this sort of patient behaviour really bothers people, then I suppose it is right that we have this discussion, and get it out into the open.
Patient 'advocates' should not be above criticism.

But it does really bother me when I see patients being 'blamed'... It really does...
When I see 'blame' being apportioned, then all I can see is an injustice, and that makes me react and defend patients.
Maybe I am being over-sensitive... I don't know.

I didn't have much sympathy for McClure because of the insensitive way she presented herself, and the way her study only took 4 weeks to categorically determine that XMRV does not exist (in collaboration with Wessely.)
But, yes, when the attacks are widespread, including attacks on Petterson, then I must agree that there is a problem.

There's two things I question though, for which i genuinely don't know the answer:
1. If we were all perfect patients, would the situation really be any better for us?
2. Does the bad behaviour of a few individuals really give the whole ME community a bad name?


Anyway, what we can all agree on is that we need to focus on what is constructive and productive for our community.